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Guest AutumnE

Since Going Gluten Free What Is Better In Your Life?

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I love this thread!

For me, it's no more painful gas, no more loud tummy grumbles (soooo embarrassing!), my tummy is so much flatter, finally able to lose that 10 or so pounds that just wouldn't go away no matter how hard I worked out/dieted, no more nasty rash all over my legs and back, no more cracked fingers due to the rash, my face cleared up, I have more energy, I sleep better, no more back aches, no more night-time anxiety attacks, and no more dizzy/sick/tired all the time.

I still after 1.5 years have D much of the time, which isn't good. I don't know if it's IBS on top of it all or if maybe I'm allergic to something else. However, I'm generally in the bathroom 1 to 2 x per day rather than 5 to 10, so that's certainly an improvement!

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9) Everything. Everything, everything, everything.

10) Everything.

I'm just so very, very grateful for ALL of it.

Nancy

Wow Nancy that is SO great! :D You are really an inspiration! I've been having a hard time with the withdrawal symptoms from wheat but I added more B complex and B-1 and boy it's helping a lot! I noticed the "brain fog" going away..which I thought was menopause... :) It's quite a bit more easy when you're younger to give up gluten...

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2kids4me- I would love to read it, Its funny I collect all the chicken soup for the soul even if they dont apply to me. :) I love heartfelt stories!

Ok...you asked for it, It may get voted longest post ever.... It is stuff I wrote down as it happening so there was weeks/months between some paragraphs..

Our Journey...so far... I added a big chunk after posting , finally found where I "stored it" on the computer! :rolleyes:

Our daughter was born with low muscle tone (hypotonia) and was a little floppy. She sat at 10 months, scooted on her bum (never crawled), stood at 2 yrs, walked independently at 3yrs, and was delayed in speech. Her pronuciation was clear but she was slow to combine words and her receptive language skills were significantly delayed. She had poor balance and needed assistance at the playground for every activity. Potty training - what can I say, I really appreciated pull ups for toddlers! She wore pull ups until 4 years of age, partly because getting to the potty is a pre-requisite to using it, and walking was still a new talent. She could not look me in the eye and would get upset at changes in routine. She was stuck in the stage of playing side by side with another child rather than seeking interaction.

Most medical tests came back normal but each evaluation by therapists put her further behind on the developmental scale.

We had concerned professionals (doctors and therapists) investigating all the different possibilities that would account for the developmental delays and hypotonia in our daughter. We had blood tests for inborn errors of metabolism, x-rays, genetic studies, a muscle biopsy to explain the hypotonia and inability to walk, CT scans, and an MRI; referrals to specialists in muscle disorders and evaluations by physical, occupational and speech therapists.

She struggled in grade 1, and grade 2 started off horrible. She was stressed, came home and cried, and began self stimulatory behaviors - one behavior was her licking her hand and rubbing across her mouth. It was so bad that her skin in the area was red, raw and bleeding by the end of the week. I would pull her out of school at lunch and do the work at home.

Fortunately for us her teacher had seen Aspergers before and called us in for a meeting, she asked if anyone had ever talked to us about autism or Aspergers before, and we said that she displayed autistic tendencies but she was not yet diagnosed. We had already had every test in the book including pyschoeducational testing. I called and explained the situation at school and the teacher’s suspicions and our pediatrician saw us immediately.

She confirmed the diagnosis after a lengthy consult and reviewing test results.

Within 3 weeks there was an aide placed with our daughter, the stress behaviors faded, she didn’t come home with homework and she was happy!! I gave permission for the teacher to explain Aspergers to the class while my child was away from the room; the teacher reviewed the 5 senses (sight, hearing, touch, smell, taste) , then she used the explanation of a missing sixth sense - the social sense. The class has been supportive and helpful to our daughter and include her when they think she is being left out.

We decided to talk openly about the disorder by reading the book Asperger’s Huh? by Rosina G. Schnurr as a family. I did this because it felt right for us, and necessary as well.

The night we read the book, our daughter literally grabbed the book after we were part way through and said “ I know! Is this about me?” and as we read more, my son asked lots of questions and I could relate to the pages about doctors appointments etc.; our daughter lit up with excitement. the only way I can describe it is: she looked relieved. The book described her frustrations, it gave her family a glimpse into her world and it helped us all understand that she needed help in certain areas, and that we were not alone. She asked many questions for many days and she was happy each time we talked about it ... I can’t remember her exact words but it was something like : “I like it that you understand me”. In typical fashion she also would blurt out to other kids and adults “I have asperger’s!” in a proud, loud voice. Then she would just stand there, not sure what else to add, she just wanted the world to know I guess. We talked to her about appropriate discussion of Asperger’s since many children and adults didn’t know how to respond to that tidbit of information.

It seems to take forever for her to master new skills - either physical or social, but she eventually does and then she almost accelerates her learning curve with that particular activity. I compare it to the construction of a paved road - first they survey, clear trees, dig, smooth the dirt, then all the layers have to be laid out - that takes time and patience, then the pavement layer is applied, and after passing a construction zone for months - there is a brand new road and it will always be there. After a few months you even forget what it was like before they paved it!

That is my comparison to new pathways being developed in the brain of a child with Aspergers. In the normal child, most of the basic work is done - just the paving to be completed and that doesn’t take as long as starting from an empty stretch of land.

In addition to the Aspergers, Kathryn has hypthyroidism and central hypotonia, she was also was diagnosed with Kawasaki disease in June, 2003. It is an inflammatory disorder that caused damage to both her coronary arteries, she is in a rare group as it usually occurs in children under the age of 5 years. My son Matthew was diagnosed with Diabetes in Sept 2003, only a few months after the Kawasaki had hit Kathryn.

I was sailing along figuring that I had this coping thing mastered, then WHAM ... another condition I have to read about, and also to accept that my daughter has acquired heart disease. I was saddened that yet another problem had arisen for my children and it didn’t seem fair at all. I watched Kathryn playing, (and bugging her brother) and..... simply living each day. It took some time but I realized that I would not waste time in darkness or let this limit our fun today. I know that anger and sadness had swallowed me before, and I would not let it rob me of time with my family today. So we add another specialist to the list of doctors that care for my daughter; and I appreciate once more - the guiding light that sent us to our pediatrician- she correctly diagnosed a condition that is not normally seen in older children and we can receive the care Kathryn requires to live life to it’s fullest. Matt accepted his diagnosis and we gradually developed a new routine around the house

As the months become years and time passes, I look back and see the past piled up in pages of OT reports, evaluations and yet another medical appointment followed by brief interludes of seeming normalcy. It begins again with complaints of stomach aches and headaches... I wait, trying to determine if the physical pain is rooted in Kathryn's attempts to fit into the world of neuronormals, is my son's joint pain and stomach aches a result of coping with his medical problems or is it something ELSE intruding on our world. It is the latter and once again I retreat to my writing to find answers to the question that will never be answered - WHY? Why can't we just stop here and learn to cope with Aspergers. I anticipate friends and family rolling their eyes as we start the cycle of appointments and testing and more tests - in fact each time I am in the waiting room - I ask myself - am I too protective, maybe I am looking for something that isn't there..and then they call my child's name.. In a few short months of testing and biopsies - making sure I was bringing the right child to the appts. (dont laugh, I double check because they both see the same endocrinologist and gastroenterologist), it is confirmed that my concern was valid, they both have celiac disease.

I become engulfed in a familiar routine of sadness, fear, self-pity and longing for normal. I waste less time in the sad feelings but I still dream of normal. The way one would dream of a fantastic vacation that wont cost a penny and you can stay as long as you like. You know it will never happen. Each time we face a life changing diagnosis, I take lessons learned in the past and focus on the positive. I see both children regain health and vitality on the gluten free diet, each injection of insulin is seen as life giving not life limiting. We have added an allergy to the lengthy list as Kathryn is confirmed to be allergic to yellow jackets and must carry an epi-pen.

So for all of you that struggle not only with an autistic disorder, but with one or more medical conditions - its another step in the journey. Look to the sky and find a rainbow of hope ... sometimes you can’t see it till the clouds go away, and remember that rainbows can only be seen AFTER a rain. Maybe that’s a lesson for us, only those that have been under the clouds and felt the rain ... but still look up afterwards... we are the lucky ones when we spot the rainbow, for we know it means a brighter day ahead. If you go inside and shut your door, or hang your head under an umbrella and wish the rain would just go away....... you’ll miss that feeling of seeing the sun show you the spectrum of light...it’s not unlike the spectrum of autism - so many colors, so much beauty, each color blended with the next, and each rainbow is unique, just like each child with an autistic disorder. No two are ever alike.

It doesn’t mean that we dont feel sad when we get rained on (figuratively speaking), sometimes it feels more like a hurricaine! Just don’t forget to look for the rainbows after the storm..... call a friend or family member, watch children play, go for a walk, give a hug or get a hug from someone..... :):)

Sandy

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I've been having a hard time with the withdrawal symptoms from wheat but I added more B complex and B-1 and boy it's helping a lot! I noticed the "brain fog" going away..which I thought was menopause... :) It's quite a bit more easy when you're younger to give up gluten...

Mayflower, I have found it quite easy to give up the gluten as far as withdrawals go, I don't seem to crave bread and things. I am so glad about that. But we all are each different. And I hope you overcome your withdrawal problems to wheat soon.

About the brain fog, and my lessened brain function,I thouht it was because of approaching menopause. I have still not got there, not be there soon, but I'm so much better.

I don't know whether it is easier to give up when younger. My teenage son might be facing the same possibility and he is really worried about it. He is worried that there will be no more of his favourite foods. And just approaching an age where he is going to be soscialising more, he would like to be able to enjoy the same foods like any teenager. That would make it harder for younger peoplle, they socislize a lot more than an older person. The teenage years are hard enough without the added complications a coeliac diet would give.

And I am worried, as for only me being gluten free, in the kitchen was easy, but to consider someone elses gluten free taste buds will be a real challenge. But if I have to do that, I will do that.

Cathy

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